ELLIE'S BLOG on Living Well with MS

It all started on Halloween. I had been busy all day with Church and then phone calls for my congressional candidate. I had just gone through my list when the doorbell rang with the 1st Trick or Treaters. I enjoy seeing the kids in their costumes and their parents are usually with them . Everyone was very well mannered.

But it didn't stop ! More kids kept coming and coming. Parents were driving their kids from 20 miles away to our streets. By the time I got to the 300th I was not enjoying this at all. I didn't see any local child  or neighbor just strangers. Three teenagers came up on the porch and I bellowed, "your too old get off my porch" I was changing into an old hag.

Then I found myself dropping the candy and they kept knocking and knocking and I kept limping back for more candy. I was now becoming a crippled hag. I was so tired that I couldn't even bring the faces of the adults on the sidewalk into focus. Now I was turning into a blind crippled hag.

Finally as the candy was almost gone anyway I closed the door and turned out the light. But their  steps were still going across our porch and the knocks continued. So I turned out all the lights in the front of the house. That did the trick.  I the going blind crippled hag hid in her cave (bedroom)

According to my young neighbors who had decorated their houses there were 1200 kids trick or treating .

The next traumatic event happened Tuesday night . My candidate lost and the republicans were sweeping. I felt like staying in my Cave with the blankets pulled up over my head. I just felt numb -then angry- then scared.

Then on Wednesday the 3rd traumatic event occurred. I gave a follow-up call to Accorda (Amyra's manufacture) about my getting financial help from them as my secondary insurance Epic could not cover me for the drug as the pharmacy delivering it was out of state. Their rep stated the hitch was that Accorda needed a letter from Epic  stating why they could not cover me before they could give me financial assistance. And Epic was not willing to do this. Back to square one.

So I called Epic and after much explaining I was also told they would not send a letter. When I stated my next call was going to be to the State Health Dept. things changed. The rep I was talking to told me to hold. Then he came back and said they would send me the letter. But after a sleepless night I knew I needed more firepower.

Who knew when and if that letter would arrive. So I called my State Senator's office and explained the situation. They agreed the letter had to be sent to me . The Senators Aide requested  I send him an e-mail relating the issue as I had explained it to him. Which I did.

Then later that day I received a call from the rep  from Accorda that I had been communicating over the past months that she had good news. She stated after our last conversation she went to management and they ok'd my getting financial aid even if Epic would not send the letter. I felt more hopeful when I went to bed Thursday night.

On Friday I felt more relaxed and had an appt. in the afternoon with my ophthalmologist which gave me the 4th traumatic event. My vision had deteriorated since my last visit 6 months ago. This was a more advanced progression of my dry form of macular degeneration. Yikes!!

Here I am walking consistently better than I have been in over 10 years . The past 3 months have been amazing thanks to Ampyra, Rebif and monthly sol-u-med treatments. And now my central vision is going!!! This isn't fair.

But who said life was always fair.

After feeling down for the weekend I went out this morning and got my hair done. And then indulged myself in a manicure kit and other cosmetics. As I walked all around the stores with my walker which until now I had to do with my wheelchair my mood lifted. I'll find ways to adapt if and when my vision  gets worse. I've had experience with adapting.

When I got home and walked into my front parlor there was my Christmas Cactus blooming early. Just when I needed it. Now that's a good sign.

There were lessons learned from this week.

1. Don't put myself into situations that overwhelm me. Admit I'm overwhelmed and back away.

2.Realize that our health care system is large and missteps will happen. Advocate for yourself but don't let it emotionally get to you to much.

3. Remember the Serenity Prayer "Courage to change what can be changed,accept what cannot be changed and wisdom to understand the difference                                             ellie